Its funny that you have asked this Dusty... My one HD- brother has been so ticked off at my father for so many years because he was HD+, and it was a really bad situation with my Dad. When we learned what he had, my HD- brother didn't care... it was all about the abuse that my Dad did to my Mom, and most of us kids, at the time. Apparently he has felt the need to share a lot of info between us wby Suzanne - Huntington's Disease Support Center
Thank you all so very much for all the prayers and thoughts and support. He did smile a lot there, and i am glad he was at peace with everything that went on weeks prior to his passing. My sister is not doing too well... she has been aspirating as well, off and on feverish, and losing more weight, and is just crushed that her baby brother is gone now. It was so heartbreaking telling her this.by Suzanne - Huntington's Disease Support Center
To my brother John, who has certainly suffered, I love you, we love you, and may you finally be at peace. Suzanneby Suzanne - Huntington's Disease Support Center
Six kids, and four with HD.... My father and his twin sister both had it. Her children-so far just one out of the three.... My oldest brother once told me that since three of us had it, he would not get it. 50/50 he said. Of course, he was wrong, and ended up with it too. And he took the longest to show symptoms. My oldest sister was showing signs in her late 20's, and is still trying to mby Suzanne - Huntington's Disease Support Center
Hello, Well, this is a very good question, and I too will not delve too deeply... let me start by saying my father was a minister... Hahahaha! He was! It made me do a whole lot of soul searching growing up, considering there were sometimes 4 church services we all had to attend with my Dad when I was young, many times... So i had my "fill", and I changed as I grew. With all the HDby Suzanne - Huntington's Disease Support Center
Hello Alice, I apologize for insinuating the choice with acceptance or denial. That truly is not what i meant. I simply meant that my own family members did make choices that could have made things better or worse. It is something that our family would know the difference of, not necessarily any one else looking in. I know that there are people that are very proactive in their illness, andby Suzanne - Huntington's Disease Support Center
I have to say that my sibs were very similar and at the same time, different. My 52 year old sister was the first to show any symptoms, and that came by way of paranoia and a general intensification (if that is a word!) of her personality. She fought tooth and nail over everything... EVERYTHING. She was in her late 20's, 28, is what I would say. The next to come along was my other sister, whoby Suzanne - Huntington's Disease Support Center
OMG what wonderful news, Marsha and Steve!!! Just awesome!!! I am so very happy for you both!!! Expect big hugs from me if you are ever at the Guthrie Center again!!! Oh this is just fantastic!!! The best to you!! Suzanneby Suzanne - Huntington's Disease Support Center
Hello All! Its been a while... I decided to contact our local paper when the HD Walk in Stockbridge, MA was held. I asked them to print an announcement about the walk, because there are others in my home town that have HD in the family. After sending a very lengthy and detailed email per the request of the editor, he actually scheduled an interview with a reporter. My mother in law and I mby Suzanne - Huntington's Disease Support Center
hello, I have to say i was very nervous... I also wanted to say that it did not go totally the way i understood it would. I was there to talk about Karen and the court deal that she did so successfully, and while we DID talk about all that, it was in the green room, and when we sat to do the show, it was again a different line of questioning. I am sad about that, because I told Karen that itby Suzanne - Huntington's Disease Support Center
Hey Jim!!! Jen and I and Darryl and Robert will be there!! I re-read what you said above but the blond hairs are affecting my eyesight... so we are giving the whole total to the Casa people? Which means the Hereditary disease foundation, correct? Is it just a NY state thing, or do people in every state give a hard time about donating when there is no IRS 503 form, (or whatever!). If itby Suzanne - Huntington's Disease Support Center
I just want to say that the beginning of it all IS the scariest. I did not have a spouse to worry over, just my siblings,which is totally different, and that was/is enough. It is a natural reaction to look more closely at things once you know the reason, and therefore you may also see things amplified, and that is NATURAL. I can totally understand this. I think that as time goes on, and you dby Suzanne - Huntington's Disease Support Center
Hello Rodrigo! I did a search for an article that my cousin found with my uncle's name, and it is Jose Berdichevski. I googled it. It was written in 1965. He was Chief of Public Relations for the Chilean Air force at the time. When I was about 7-8, he was Embassador to Israel, and had my mother join he and my aunt there for a month. (I was heartbroken, as i missed my mother terribly!) Mby Suzanne - Huntington's Disease Support Center
Excellent news!!! I am so happy to hear it! Chile, yes?? Very cool, as my Aunt has resided in Chile for most of her adult life! Her name is Estelle (sp) Berdecheski...I am ashamed, as I do not know the correct spelling, but her husband, Jose, was an embassador to Israel in the 70's. My mother went to Israel to visit with them for a month. I have not ever contacted her, Aunt Estelle. Shby Suzanne - Huntington's Disease Support Center
Hello Tracie, My family was as follows: Father, age 36 or younger - symptomatic Sister Karen was 26-27 when thing started getting weird for US, but her husband says earlier. Sister Carolynn, about 30. Brother John, about 30. Brother Paul, about 40, however his wife and he had many problems that were kept quiet for some years, and no one knows how long. He is the oldest, and actually dby Suzanne - Huntington's Disease Support Center
Renate, I hear you. I have been a reader and not much of a poster, because i couldn't at work, and most of the time the home computer was out of commission... I have read what you and your husband have gone through, and I am very sorry. It is one of the toughest, no doubt. I will certainly make the most of the time we have. She is still very up with her victory, and for that I am grateby Suzanne - Huntington's Disease Support Center
In my family, this came from my father, and his mother. His mother had the two, twins, and both ended up with HD. My father was an introvert, despite being a minister, and my aunt was a fireball, and lasted almost 10 years longer than my Dad. Of my Aunt's three kids, one is in mid-late stage HD, and the other two are unknown and not showing symptoms. The oldest is the one with HD. In my famiby Suzanne - Huntington's Disease Support Center
Dearest Ron, I am sorry to hear of Barbara's passing. It has been a while since we have talked. She is free at last, too...May God hold you and your family close, and bring peace to your heart. Much love, Suzanneby Suzanne - Huntington's Disease Support Center
Thank you all, my goodness. That is why I reached out to the lighthouse so many years ago now, because of the support and caring there and at the the HDAC. Steve and Marsha, there aren't words enough of thanks for giving us all a voice. We saw Karen today, and my brother Paul. Brother John was not in the mood and didn't want to get up. That is okay. There are days we need to stay in bed,by Suzanne - Huntington's Disease Support Center
Thats why I liked your reply so much Debbie. It was honest. And just like when I do that HD walk every year in MA, and get people to donate, I say that while my family will not directly benefit from any breakthroughs in treatment and or a cure, there is the larger group of people with HD or at risk that will benefit from it. We are making progress, and while it seems slow, and may not be for eby Suzanne - Huntington's Disease Support Center
Thank you all so very much for your replies. I just checked the Hard Choices website too. There is some pretty good topics there. I have to say, we have come a long way, my family. I agree that talking about death openly is a very good thing. We are pretty good about being open with each other... We have all of their arrangements already made, except for Karen's. The only reason hers haby Suzanne - Huntington's Disease Support Center
Yzrabbit 1, Yes... and yes. I need to mention that I tested negative for HD. I did not say that in response to this thread. I have two brothers and a sister now, that have HD, and a cousin. I know that I can still have some problems in my life, regardless of my test result. I have to say that I have seen more courage, more determination, more dedication, in the HD world than I have seen iby Suzanne - Huntington's Disease Support Center
Debbie, I certainly agree. I think what you wrote the first time, and what you just responded to, are well put. There is just a myriad of things in our lives that can happen... good and bad. Anything can happen. So we need to make the best of things, and we know there are many things that can and are and WILL happen, that will fulfill us regardless of what happens in the end. As youby Suzanne - Huntington's Disease Support Center
Hello all. I have not posted in a long long time. I am posting now to ask a question, and it is a serious one, (they all are, I know, but this is maybe depressing too, depending on your point of view.) My sister Karen, she is under NYS guardianship. She just recently won a court case in our county. Her rights to end of life decisions. We found out that under guardianship, the law statesby Suzanne - Huntington's Disease Support Center
Debbie... I have to say that your reply was not only very thoughtful, but very honest, and still full of hope. Very eloquently put. Hugs, Suzanneby Suzanne - Huntington's Disease Support Center
Ron, you have always been the best to me, whether you were cranky like I get ?? or happy, or melancholy.... you have always been there for me, and we used to talk so much before the job change and the crashed computer at home.... I also don??t have a clue as to what you were saying about an alter ego, except that I like the whole person! ?? I can take the bad with the good, and whatever I can?by Suzanne - Huntington's Disease Support Center
Awesome Ron!!by Suzanne - Huntington's Disease Support Center
Hey Howard! I apologize, but my memory is just awful when it comes to names. I can see faces, but have always had a hard time with names to match it.... that was my niece that you were walking with maybe, and her boyfriend? We actually have my brother's ex-sister in law and husband that does the walk every year, and two of my sister's (and brother) friends that do it too. It is so nice to seeby Suzanne - Huntington's Disease Support Center
Actually, I would like to say that I agree Ron and Barb, that this story IS wonderful - for the people that have helped this man, and went over and above what most people would do. The caring and compassion they have shown is so touching, and I hope that I am a person like that. I think this story turned two different wheels; the reality that many of our sick are left out there, with no help, aby Suzanne - Huntington's Disease Support Center
Amen Jim... my GOD, amen. I mean, in my family, with the stories that have been shared with me from other HD families, I feel like we got off lucky. I too contacted my state "leaders", and all they cared about was what party I belonged to. Not one of them even tried to contact me about the whole situation with regard to Adult protective, Child Protective and Mental Health, whom I hadby Suzanne - Huntington's Disease Support Center